The Spirit Catches You and You Fall Down

After repeated recommendations from Sophisticated Dorkiness, I found a copy of Anne Fadiman's nonfiction book The Spirit Catches You and You Fall Down (A Hmong Child, Her American Doctors, and the Collision of Two Cultures). It begins as a story of culture clash between immigrant Hmong parents and arrogant American doctors, and tells both sides of the story without blaming either one.

As I read it, I got angrier and angrier. I'm an upper-class, well-educated American who speaks good English, but during the times that I've been subject to the dictates of our medical system, I've experienced some of the same bullying that Fadiman attributes mostly to cultural difference. Doctors are interested in lives, not in souls, she demonstrates, using one doctor's own words on the subject. It's bending to the needs of immigrants to do something like allow family members to stay in the room with a critically ill child. Why? Why do most Americans routinely knuckle under to the demands of doctors who don't see us as people, but as broken body parts?

I am the survivor of five hospital stays, three for knee surgeries and two for childbirth. I know first-hand how demeaning it is to be treated like a purely physical object who is required to obey every recommendation or be labeled "noncompliant." I was consistently bewildered to hear laments over "drive-through delivery," because I was forced to stay in the hospital longer than I wanted to (12 hours for my second birth) and not allowed to have my baby with me except at the whim of the nurses.

Perhaps you think that going to a hospital should require me to surrender my will entirely to modern medicine and its dedication to health at any cost, without any regard for quality of life. I would not agree--and as a result, reading The Spirit Catches You and You Fall Down (the title is a Hmong description of epilepsy) made me very, very angry indeed.

Let's take what happened to Lia Lee, the "Hmong child" of the subtitle. Her doctors got frustrated because Lia's parents, who speak no English and in fact have no written culture, were not carrying out the instructions that were written in English on the various medicines they prescribed, medicines that had--as so many do--unwanted side effects, both physical and behavioral. So what did the doctors do? They had Lia taken away from her parents and put into foster care!

Fadiman quotes the doctor responsible for this outrage as saying "I felt that there was a lesson that needed to be learned....I felt it was important for these Hmongs to understand that there were certain elements of medicine that we understood better than they did and that there were certain rules they had to follow with their kids' lives. I wanted the word to get out in the community that if they deviated from that, it was not acceptable behavior." Lia's parents did not see their child "for more than a month," and they weren't even told where she was "for several weeks."

Fadiman tells story after story of the arrogance of modern American health workers, from the ones at a refugee camp who "failed to win the cooperation of the camp inhabitants because they considered the relationship one-sided, with the Westerners holding all the knowledge" to the California home health care worker who told the Lees not to give a quick-acting laxative to their incontinent and brain-dead child "because if you keep using the medicine, then Lia will always have to have the medicine, and that is a bad thing."

Only after their "culture of biomedicine" fails to cure Lia do her American doctors seem to have any sense of perspective about what they've done to her. Her chart notes that after brain death, she no longer has seizures, and her soft food diet has "cured her obesity," prompting one of her doctors to observe that "she was real healthy....She was the healthiest she'd ever been. She was just perfect. A perfect vegetable." Another doctor observes that she had become "just the sort of patient nurses like" because "she had metamorphosed from a hyperactive child with a frightening seizure disorder and inaccessible veins into an inert, uncomplaining body who would probably never need another IV."

Fadiman tells some stories about medical professionals who succeed in communicating with and treating Hmong patients, like a man who was hospitalized for an infection and was upset about the "routine admission form" question about whether he wanted to donate his organs if he died. He clearly demonstrated unease in this situation; how many of us would have been more quietly upset, filling out such a form for ourselves or a loved one?

Stanford Medical School, Fadiman says "is trying to bring back what has been called the 'whole doctor--whole patient' model, in which the doctor brings his or her full humanity...to the hospital, and the patient is viewed as a complete person (not just the appendix in Room 416). This model is nothing new; in fact, it is what all doctors used to be taught."

In so many areas, we're learning that science alone is not the answer to all our problems. The popularity of Michael Pollan's books, for instance, is one indication of our dawning awareness that a narrow focus on nutrition has not been effective at improving the eating habits of Americans.

Medicine is only one of the difficult topics Fadiman addresses in The Spirit Catches You and You Fall Down, but it's the one that I obviously reacted to most strongly (here's a different review). Do you think I'm over-reacting?